I'm Kel, a Canuck turned Yankee, avid reader, a bit of a gamer, and a mother to 3 fabulous boys. Eric, a fun loving 1st grader, Danny, our CMV miracle, and baby Andrew all share in the adventures chronicled here! Together, we make our way through life, dealing with deafness, pervasive developmental delays, plenty of skinned knees, dare-devil attitudes, a little sass, and a lot of laughter.

I have, I think, 3 different blog posts all bouncing around my head right now and haven’t been able to put words to paper screen.

In the mean time, Danny’s headpiece is still missing. Not only have we turned everything upside down and sent letters home with parents, but they actually disassembled the built in cabinet around the sink, because it could have fit beneath it. The thing has literally vanished. We ordered a new one today; we had the option of submitting it to insurance first, but considering that would take at least another week or two, and Danny has been exhausted listening with only one ear, we just bit the bullet. I figure I’ll try submitting it to insurance after the fact and see what happens.

We’ll have it tomorrow.

Danny has been thoroughly impressing me with how well he’s listening with just one ear. We switch sides daily so that both are continuing to be stimulated, and we’ve had to fight with more pulling off than usual (as it bugs him to be lopsided), but he’s doing well with it overall. The poor kid, whose normal bed time is 7:30, has been dragging by 6:30 though and falls asleep an hour early for naps.

If ever I doubted going bilateral, this has been an eye-opener for me. It is obviously so much easier for him to have both. I know kids do great with one, but Danny struggles enough, you know?

In a way, I’m surprised it hasn’t happened until now. I can remember as far back as Thanksgiving fighting the battle of the headpiece, where the small (not much larger around than a quarter) microphone/magnet/trasmitter of Danny’s cochlear implant randomly falls off and gets lost in all the strangest places.

It’s been lost in the strangest place of all now: nowhere.

Where, oh, where are you??

He’s been ripping them off and dropping them lately, a toddler attitude problem that is a combination of “I don’t want to hear what you’re saying” and “I want attention” that never fails to get people running over to him. So, when Danny went to open the gate between the toddler and 2 year old sides of his room at daycare, they told him no and he yanked them off.

He dropped them, and one was gone.

They’ve searched high and low. We’ve torn the rooms apart. Heck, the area director helped them look for it today. Still, it’s missing. Thankfully, being bilateral means that Danny’s still got sound, and he’s doing a great job with just the one. However, that’s a $375 piece of equipment, and we’d really rather he have two. On the positive side, it was lost inside. Imagine what could have happened if he’d lost it, say, in the yard…

So we’re down to one ear for a while. Next week we’ll look into replacements – how to get one, if we have an “oops” on our warranty, that sort of thing. But for this weekend, I’m just praying that he doesn’t lose the other one too.

Danny’s receptive language seems to come and go in waves, and I’m learning a lot of baby steps away that I never would have realized – never did realize with Eric – were steps in language development. It’s amazing the things you just take for granted until you have a deaf child, truly it is.

Things like telling your child to “sit down” in a restaurant when they’re trying to stand up in their high chair for the fifth time. (Which he listens to, by the way – or at least, he sits down, then pops right back up when he thinks I’m not looking.)

Or like baby patting the picture of himself in a book when Mommy says “there’s Danny!”

A lot lately, Danny has been paying a lot of attention to facial expressions and mouth movements. He’s mimicking a lot of them, and even if sound isn’t coming out, it’s easy to tell that he’s really starting to think about the way speech works. I was hanging out with the boys the other night and yawned, and Danny came up to me – right in my face – and opened his mouth as wide as it would go. Then, he just stared. After a moment of confusion, I opened my mouth like his, and he snapped his shut and giggled at me. It’s become one of our new games, and we’re adding an “ahhhhhh” with it too.

We do a lot of playing on the floor and the futon, and one of the best games, in Danny’s opinion, is “Crash!” When I played this game with Eric, it was basically me grabbing him around the waist and throwing us down into a pillow, yelling, “crash!!!” With Danny, I’ve expanded it a bit: “One…two…three…CRASH!” I pause between each, and really take care to exaggerate each number as I speak it. (Thank you, years in choir, for helping me pay close attention to pronunciation and vowel shaping!) The crash is usually fast and full of laughs, but the counting is full of anticipation as Danny stares at me, a little grin creeping onto his face.

A couple times, he’s popped back up and gotten this look of deep thought on his face. “Ah? Ih? Ee!!” The vowels aren’t exactly right, and the consonants are entirely missing, but you can tell…oh, you can tell exactly what he is trying to do.

The language Danny picks up is never the ones we try to get him to pick up. He’ll be completely mum when we try to prompt him to ask for food or drink or toys a lot of the time, and no matter how many times I tell him it’s a nose and poke it – mine or his – if I ask him where his nose is he just stares. It’s the things in play, the totally unexpected, not thought about, and easily taken for granted moments that stop me in my tracks now.

Danny and his deafness may not be teaching me patience – because I am plenty impatient still! – but he is definitely teaching me to appreciate all the little things.

I saw this in the paper a little while ago while it sat on the table in our lunch room at work, and have been meaning to bring it up ever since.

We’ve known for a while – OK, for a good long time now – that we are lucky to be in St. Louis with Danny. Since we’ve chosen an oral route for our family, it really is the place to be. We’ve got 3 solid oral-deaf schools, which do everything from help teach masters students training to work with deaf children to hold workshops in the summer that parents and families travel miles for.

The news story I saw was that one of the schools is reaching out to families outside of St. Louis once again, in a modern way. For years, the schools here offered residence programs that families away from St. Louis could send their children to, but as oral deaf schools start to pop up in other locations and resources become more readily available for parents of deaf children with hearing aids or cochlear implants, those programs have suffered and pretty much been put to an end.

Now, St. Joseph Institute for the Deaf has begun offering online therapy sessions, a first in the country. This opens up the boundaries so much for people with no local oral school to still get the guidance and therapy needed to help their kids succeed, without displacing families. St. Joe’s has put in all sorts of money to ensure they’ve got the technology and the secure connection, so sessions can’t be eavesdropped on, and they’re also reaching out to rural communities in the state to work with their school districts.

I love to see this kind of stuff. This technology is amazing, but I know first hand how much else is needed. It isn’t just a case of getting a child a cochlear implant and then – BAM! – they are talking. It takes a lot of time, work, and therapy. I think this new way of reaching out is awesome, and hope to see programs like this popping up all over!

365 days ago, at this moment, I was a bundle of nerves as we got ready to head to the hospital and get our first hands on experience with a cochlear implant. I had no idea what to expect for the day, for the week, or even for the first year. I had high hopes, and I’d be lying if I said all of them have been met in this first year. Like in all things, Danny’s story is not a miraculous change as you see in some others. To be perfectly honest, I’ve had some emotional struggles as this date approached, because of all the other hearing birthdays I’ve heard about and how much further along they are at this point.

But, Danny is Danny, he takes his time and has been focused on other things instead – walking, eating, two handed play, so much in just the past 6 months.

His hearing today is such a miracle.

In this year, my deaf son has rediscovered sound. He’s been reunited with the sound of our voices, mine and dad’s and brother’s. He truly loves to hear, even if sometimes he isn’t all that interested in listening.

He babbles a lot today, m’s and g’s and b’s and y’s and so many different vowel sounds. He’s beginning to experiment with shorter phrases – mama, mama instead of mamamamama. He will occasionally screech or yell just to delight in his own voice, and will whisper “puh puh” at me sometimes if I pop my lips together.

He has no true words yet, but he’s starting to use his voice to request and communicate. He uses “mm mm!” pretty much universally to get what he wants, though has repeated “uh” and “owm” for up and down after prompting. (Well OK – he did “mowm” once and never repeated it, but I’ll count it anyway.) He knows that a monkey goes “ee ee aa aa” and will gladly say it back and forth with you over his monkey whenever you want. As for lings, he’ll repeat four: mm, oo, ee, and ah. Plus silence, of course; he’s great as modeling silence! He also echos “hi” and “uh oh” sometimes, though again, we don’t think with meaning yet.

Receptively, he knows his name, he knows to go to the gate when “it’s time to go” and to go to the garage when we “go to the car.” He understands no, even if he sucks at paying attention to it, and will “come here” or “give it to me” when we ask him to. (Usually. He is a toddler, after all.) He knows what to do for patty cake and peek a boo and waves for “hi” and “bye” without anyone else waving, if he’s in the mood, and will even “clap” for us too.

He loves the sound of his brother’s voice, and if they’re upstairs and I encourage them to “chase” he will take off running the path that they chase each other all the time. If Eric is making noises for toys (moo for cow, rrrrrrr for trucks, roar for dinosaurs), he will mirror it back in play much more reliably than he ever does with me.

If anyone is laughing and he hears it, back turned, around the corner, totally out of sight…he cracks up laughing.

He will look at me if I say his name in the running car with the radio on.

Ours is not a story of speed, but it is very much a story of success. His hearing is one year old. According to most resources, at 12 months on average, children:

-Use one or more words or fragments with meaning (fragments, yes)
-Practice inflection (yup)
-Try to copy new sounds (yup)
-Makes sounds to get attention, make needs known, and protest (yup)
-Follow simple one step directions, eg “sit down” (yup)

He may not be gaining ground just yet, but he’s keeping pace, and once he decides to focus on language he will flourish. I am so excited to see what the next year brings!

(And yes, lame amount of pictures, I didn’t realize the date and haven’t uploaded any of the photos I have of Danny lately!)

One of the hardest things to gauge in a child, I think, is their receptive language skills. It’s this reason that many parents wonder about their children’s language development before 2 years, and a large contributing factor to why so many deaf children are not diagnosed until after their first birthday if not later. If a child does not engage socially, has physical delays, even if they can’t see it’s usually pretty apparent quickly, but with hearing, there’s no telltale sign and no way to gauge whether a baby isn’t hearing or just isn’t reacting.

The flip side is that deaf babies do react to loud noises for other factors: vibration, air gusts, etc. In Danny’s case, he was more visual once he lost his hearing, so he would catch mouths moving in his peripheral vision and fooled everyone into thinking he was tracking voices.

To this day, I pull my hair out some days trying to gauge Danny’s receptive language. Obviously, at this point, you can tell he’s communication delayed – but what is he really getting? Being nearly 2, he’s prone to distraction and toddler selective hearing. Some days he throws me a bone and looks at me, giving a cheshire grin before blatantly ignoring what I said. Other days, he just doesn’t look at all, continuing about his business.

I figure a 50/50 ratio of listening means he understand it. That’s the best I can get.

Things I’ve seen him respond to, at times:

His name, absolutely – he’ll stop what he’s doing much of the time.

“Come here.” Yep, he does…sometimes.

“Want up?”/”Up?” He’ll come over and (sometimes) reach up

The sound of the microwave. He absolutely knows that means food’s coming.

Monkey. If you ask him to go get his monkey, he will. He loves that thing.

“Let’s go upstairs.” “Go downstairs!” Just this morning, I said this to him, and he stopped playing and went to the gate to go up the stairs.

“To the car!!” My call most mornings; sometimes he’ll head to the door to the garage.

Eat. (Ready to eat…time to eat…want to eat…) He definitely cues in, and sometimes goes to his chair.

I’ll admit, after reading so many other stories out there, I was hoping by his one year hearing birthday (a month away) we’d have a list of word approximations like this instead of a list of receptive language. That being said, though, this is still pretty amazing. He also loves to play with vowels – he’s only babbling a handful of consonants still (/m/, /g/, /y/), but he’s got a good number of vowels. Daddy will play monkey sounds (“ee ee aa aa”) or variants of it (“oo ee oo aa aa,” hahaha) and Danny likes to try to mimic along. He’s got 3.5 lings: ee, aa, and mm very strongly, and he has a sound between ee and oo that he uses for the oo sound. Depending on how cooperative he is in the morning, he’ll sometimes echo them back during a ling check, though he babbles them a lot more than that.

I’ve heard somewhere that kids have something like 50 receptive words before they say their first. At that rate…we may be waiting a while longer. But it’ll come, he’s making progress. I just wish it wasn’t so hard to gauge; he could possibly understand a lot more and we just haven’t found a way to recognize it yet.